PS.Again it only takes "that LOOK" from anyone & you know they just don't get it & just think...yeah yeah..me too get over it😢I don't leave the house now so fortunately no longer have to deal with this,but it really hurts when you're not taken seriously.Hang in there guys,closer every day for new break thru's❤😊
“Get more sleep.” I sleep twelve to fourteen hours a night and wake up exhausted. Then I am met with “You sleep too many hours and that is why you are tired.” After my cereal for breakfast I either go back to bed or to my chair to rest. The people closest to me understand, all four of them. Thank God for them.
Me too. I sleep till 10:00 am or even 11:30 am. Regardless I don’t get out of bed until 11: 00 or my symptoms start up. It’s frustrating because even my very understanding family and doctor don’t quite understand the struggle of needing to sleep so late and wanting to sleep later and later. It’s not just a choice I often HAVE to sleep that late to get through the day both physically and emotionally. I also struggle to sleep. I take two sleep medications every night and still wake up a lot.
When I was healthy before cfs I sometimes got “exhausted” from a long tough day at work but I would take a shower or sit on the couch a little bit then I would feel better. This kind of exhaustion we have a shower or a few minutes on the couch doesn’t do Jack s**t. We need days or weeks to get rid of some of the exhaustion. People just don’t get it. I’m so happy I don’t have those kind of friends anymore.
I've had ME since '95 after Mono/Glandular Fever and recently my doctor said I had because I'd worked too hard (I was accounts manager) - when I corrected him and said it was a virus he shut up. This narrow thinking is left over from the 80/90s when it was dismissed as the yuppy flu. I also dragged my poor body to the gym and got worse because I didn't know better, I thought I could fight my way fit.
When in my worst years, I would feel so tired that my instinct was to eat not only better, my larger amounts. And the feeling was that no matter what, my "body" was always starting. It is a hard feeling to describe.
I wish you could prove to some of the people who doubt this illness what people with ME/CFS go through on a daily basis I GUARANTEE they would wonder how we cope, I've had some of these comments said to me, you can see on they face's they don't believe you, this is very hurtful and upsetting in it self,tc all with ME/CFS
Another myth people believe- ME/CFS is just chronic fatigue. It’s a chronic illness not just a symptom. I don’t have long COVID or Lyme disease, I have ME/CFS. For some reason it can be hard for people to accept that you have ME/CFS. I don’t know if it’s because they don’t believe in it or if they don’t want to accept you have such a terrible disease.
In my case I have a lifetime of pacing myself where I appear normal to the average person. They never see me when I crash. They are biased to assume normal fatigue on my part because I simply disappear in between and they don’t know. It’s close family that can really be demoralizing because they could see me crash and still come up with the word “lazy” because a slew of medical tests didn’t show a specific problem. Unfortunately I was diagnosed decades ago with major depression of the atypical sub variant. Well, no one will consider any other possibility once I was boxed in that way. Tellingly, SSRI and snri anti depressants made things worse and a trial augmentation with Abilify was a disaster. MAOI deprenyl at high dosage is the only pharma drug that has helped. So for 10 years I can actually work 20 hours a week albeit with lost recovery days in between. Without fail the same relatives say to me that since I’m short of cash I should just ask for more hours to go full time plus. They still don’t get it after all that has happened in 50 years!
@@famousutopias Ugh! That’s so frustrating! Sorry your family refuse to acknowledge your illness. I was just recently diagnosed with high depression. Know that people in this RUclips community are understanding because we are struggling with the same issues.❤️Praying for you that Jesus strengthens you each day.❤️
Even women doctors dismiss women's pain and suffering. It's not something I would ever have believed until a series of them dismissed me. Would you also believe that one of them told me to, "grin and bear it," with a chuckle, because "that's what women do."
I went to physical therapy for dizziness and neck pain, and the therapist said it was deconditioning , because I had Covid and was resting a lot. It wasn’t that, when I went to PT, it was after a year and a half of fatigue, I was being treated for Long Covid. During my infection, I foolishly kept working out, I was used to working out 6 days a week, pretty strenuously, aerobics, and I was eating fairly healthy. This past December 2023, I got reinfected, and I had to quit working out, my body won’t let me now. I try to take short walks when it isn’t too hot outside. It is hurtful when they say you are deconditioned, when, clearly I was not.
A well meaning tip: If you are dealing with Long C, look up the “nicotine protocol” and Bryan Ardis, and the video “The antidote”, if you haven’t already. It got some heavy info, but might help.
47 year old woman here. I've been gaslit and treated as hysterical by medical professionals most of my adult life (I've been seriously ill since age 19). Look up the etemology for the word 'hysteria'. Disgusting.
I’ve had this condition for 4 yrs , drs of all specialties and 2 primary care doctors, have not helped me 1 bit. They look past me because they have more patients waiting to be seen. If theres no pill to give you, they wont help you ! Sorry to say: its a do it yourself job to educate yourself and learn all you can! After such a waist of my time and copays , very limited healthcare benefits that don’t cover brand name meds or tele-visits! Then bloodwork for full metabolic panel was 1, 000.00 out of pocket! Im worse then ever today. Can’t sleep at night, I believe my husband is disappointed in me being in pain and tired all the time! He might not believe me! Whenever I try to tell him what is happening, he wont look at me or respond with support or thoughts. He will quickly jump on to another subject that has nothing at all to do with me! I’m so lonely and lost and don’t think there any choices for me as no one takes me seriously! They must all think its an act! 😢
I feel your pain Kathy. It took years for me to finally get a diagnosis. My rheumatologist just listened to the hell I went through when and how I first got sick. She said right away that it was cfs. I’m sorry about your husband for also not understanding his wife. Did he know you before you got sick? My husband totally saw a big change in me right away. Show him these vids. There’s a documentry about cfs too. I tink it’s called Unrest. Make him watch that also. Hopefully it changes his attitude.
I feel your frustration and loneliness. My husband and I are separating, he became extra toxic after I started feeling unwell. It took me almost 5 years for a diagnosis, and a new primary care doctor. I also have no family support. It’s so hard.
I have had similar experiences. Once I collapsed on the kitchen floor, before I knew I had ME/CFS. My wife just scoffed, like I was being overly dramatic. That was a number of years ago, but the shaming for my condition has left a certain amount of anger and resentment even though I have made the effort to forgive her. 8-21-24; 10:15 PM.
@@towerjunkie19. Thank you do much for validating me and the support you gave. Right now , a little bit goes a long way. I married my husband in 1984 , divorced in 2017, remarried 2019! During the divorce, I had a medical condition and emergency, spent 3 days in hospital! Then they started with the referrals to specialists all the while , no healthcare benefits, no job. 1,000. Per month in spousal support. I rented a small apartment lived alone with very little money and no friends or family. I just wanted it to end with all the anxiety and other meds that were no longer available to me. So, I’ve been . going through all the motions to get well, since I got my Health plan active again, supplements and physical therapy! Much more, and he used to act like he cared but the last 2-3 years of being remarried,my hubby, pretty much ignores me when I try to talk to him about my frustrations. Not nasty, just not interested in my condition although he still bugs me to take care of all his needs, including intimacy while I have chronic pain in Cervical spondylitis and hip pain, and peripheral neuropathy! Thanks again! I appreciate your support. I-feel for you , so sorry for your pain. You history sounds very frustrating. Pray and hope in god
Eating healthier might not cure you but it’ll help your health tremendously. Shouldn’t exercise when you’re having a bad day feeling weak and exhausted. If you’re feeling up to it, go for a walk and maybe some light exercise. Movement is good. I had a couple doctors tell me there was nothing wrong with me because nothing showed up on my blood test.
💥💕💥💥💥💥Do you think Johnny about, let me take the title of a book it's called The body keeps the score. What it is basically about, it's too heavy of a reed for me, but it's about how people that have gone through a lot of childhood trauma, wounding, abuse as children for long periods of time that they get ME/CFS more than anybody because they get illnesses due to all that trauma and everything. I wonder sometimes but then on the other hand I say I have no idea I just know that I swam in a river I got a horrible virus and after that my life was never the same again ever. I'm so damn sick I feel like I'm dying all the time. Anyways I wonder how many people are willing in the comments to share Do you have any kind of mental challenges or mental illnesses I have COMPLEX PTSD and severe treatment resistant DEPRESSION. I'm curious how many people with this terrible illness we have also have mental illnesses as well. Johnny thank you for this I like these short disease that you're doing I really do because at first I didn't think I'd like it that I wanted it to be more meaty but just getting these reminders is so validating and such a help from a peer that is suffering from the same thing you are. So have a great weekend or as good of a weekend as you can. And thank you for doing what you're doing.
kavitadeva I got mine after a car wreck in 1990 causing a brain injury and multiple physical injuries. NO doktor believed me calling me lazy, which I wasn't! Most still don't believe it's a thing. I have read the book (audio because my eyes are too tired) by Bessel van der Kolk, and it made a lot of sense. OUR traumas aren't the same as some people's, but we have been traumatized, yours was a virus. Most doktors won't test for parasites, but you might want to try to find a Naturopath who will. Daily I take MSM 3000mg, Cell Food drops (by Lumina), Curcumin, Magnesium, Creatin and enzymes to help my body break down food so my mitochondria can survive. I wish you well and hope that someday we can all find an answer to this terrible, life altering, debilitating disease that causes us to feel like we are dying all the time. I think I had a happy life before and I miss who I was.
@@andeebee2530 Thank you for giving me the feedback. I'm really trying to do a kind of a deep dive on people that say trauma causes the body to have responses of getting ill in their life not that it's their fault at all it's just the stress and the breaking down of safety Anyways thank you I appreciate your feedback we got one response and that is you Thanks
@@chinookvalley just to clarify before I go on and tell you how amazing your reply is I want to say the following The trauma is not getting the virus that's not what I'm talking about at all. What I'm talking about is you know the author's name very intelligent of you, it's a very heavy book I'm talking about the body keeps the score in other words the body reflects all the childhood trauma neglect abuse criticism lack of love and attention etc and the way it deals with it is it gets ill because the system has been broken down. I just wanted to clarify that because you said your trauma was a virus. no My trauma was my mother and it was a horrific childhood. But like I said either way all I know is what did happen to me is like what happened to you we had a terrible event and after that, the body just shifted and we got ME/CFS. The ME part is some type of inflammation in the brain is my understanding. And of course you're so right doctors don't know about it. Do you know I asked my doctor if he knew about it and he said well I've heard of it but no I don't. I asked him Dr would you be willing to watch a 7 minute video by a doctor that only deals with m e c f s and he's been researching for years and that's the only disease he treats at this time in his career he says to me yeah of course I'll watch it 3 months down the road I find out by grilling him that he never watched it at all. I felt so betrayed they don't even care really I mean really when it gets down to it I has not had a doctor who actually cares. I don't know about you but for me it's very debilitating and I heard you say you do feel like you're dying isn't that horrible isn't it sad and like you said you know we have to grieve that old person that old self because I was a dancer I'm an artist I traveled all over America in my motorhome I couldn't do any of that right now if I wanted to or someone had a gun to my head. By the way do you suffer from any kind of mental illness can you please let me know that I'm trying to do some research on my own take care of yourself and I never say have a good day but I can say have the best day possible for you. Thank you so much for your reply.
Dr. Gabor Mate speaks of this as well. Everyone is different of course, but I do believe that if you went through trauma at some point in your life, your nervous and/or immune system might be weakened and more sensitive to chronic illness. I count my own trauma as the first factor in my me/cfs journey, the virus that came later in life was the main trigger though.
Sometimes people with physical limitations like me/cfs can and should be finding ways to do more than they are doing or think they can do. The person with the condition must the one who finds the way to overcome the challenge the condition presents. As always Great video. You do nice work.
Your videos are validating. Thanks for the work you do.
Thank you for your videos. I just wish the people who really NEED to see them would actually WATCH them! xx
Same
#2 and #3 I’ve had people say these things to me. My boss even told me “I’m exhausted too.” Very non-compassionate!
PS.Again it only takes "that LOOK" from anyone & you know they just don't get it & just think...yeah yeah..me too get over it😢I don't leave the house now so fortunately no longer have to deal with this,but it really hurts when you're not taken seriously.Hang in there guys,closer every day for new break thru's❤😊
Truth is always appreciated!!
“Get more sleep.” I sleep twelve to fourteen hours a night and wake up exhausted. Then I am met with “You sleep too many hours and that is why you are tired.” After my cereal for breakfast I either go back to bed or to my chair to rest. The people closest to me understand, all four of them. Thank God for them.
Me too. I sleep till 10:00 am or even 11:30 am. Regardless I don’t get out of bed until 11: 00 or my symptoms start up.
It’s frustrating because even my very understanding family and doctor don’t quite understand the struggle of needing to sleep so late and wanting to sleep later and later. It’s not just a choice I often HAVE to sleep that late to get through the day both physically and emotionally.
I also struggle to sleep. I take two sleep medications every night and still wake up a lot.
@@shepherd4406 Luck you...
ME/CFS and the sleep disturbance kept me focused on getting better sleep. I didn't know that it caused worse sleep. So I spent years chasing sleep.
When I was healthy before cfs I sometimes got “exhausted” from a long tough day at work but I would take a shower or sit on the couch a little bit then I would feel better. This kind of exhaustion we have a shower or a few minutes on the couch doesn’t do Jack s**t. We need days or weeks to get rid of some of the exhaustion. People just don’t get it. I’m so happy I don’t have those kind of friends anymore.
I've had ME since '95 after Mono/Glandular Fever and recently my doctor said I had because I'd worked too hard (I was accounts manager) - when I corrected him and said it was a virus he shut up. This narrow thinking is left over from the 80/90s when it was dismissed as the yuppy flu. I also dragged my poor body to the gym and got worse because I didn't know better, I thought I could fight my way fit.
When in my worst years, I would feel so tired that my instinct was to eat not only better, my larger amounts. And the feeling was that no matter what, my "body" was always starting. It is a hard feeling to describe.
I wish you could prove to some of the people who doubt this illness what people with ME/CFS go through on a daily basis I GUARANTEE they would wonder how we cope, I've had some of these comments said to me, you can see on they face's they don't believe you, this is very hurtful and upsetting in it self,tc all with ME/CFS
Another myth people believe-
ME/CFS is just chronic fatigue. It’s a chronic illness not just a symptom.
I don’t have long COVID or Lyme disease, I have ME/CFS. For some reason it can be hard for people to accept that you have ME/CFS. I don’t know if it’s because they don’t believe in it or if they don’t want to accept you have such a terrible disease.
In my case I have a lifetime of pacing myself where I appear normal to the average person. They never see me when I crash. They are biased to assume normal fatigue on my part because I simply disappear in between and they don’t know. It’s close family that can really be demoralizing because they could see me crash and still come up with the word “lazy” because a slew of medical tests didn’t show a specific problem. Unfortunately I was diagnosed decades ago with major depression of the atypical sub variant. Well, no one will consider any other possibility once I was boxed in that way. Tellingly, SSRI and snri anti depressants made things worse and a trial augmentation with Abilify was a disaster. MAOI deprenyl at high dosage is the only pharma drug that has helped. So for 10 years I can actually work 20 hours a week albeit with lost recovery days in between. Without fail the same relatives say to me that since I’m short of cash I should just ask for more hours to go full time plus. They still don’t get it after all that has happened in 50 years!
@@famousutopias Ugh! That’s so frustrating! Sorry your family refuse to acknowledge your illness.
I was just recently diagnosed with high depression. Know that people in this RUclips community are understanding because we are struggling with the same issues.❤️Praying for you that Jesus strengthens you each day.❤️
Even women doctors dismiss women's pain and suffering. It's not something I would ever have believed until a series of them dismissed me. Would you also believe that one of them told me to, "grin and bear it," with a chuckle, because "that's what women do."
❤
I went to physical therapy for dizziness and neck pain, and the therapist said it was deconditioning , because I had Covid and was resting a lot. It wasn’t that, when I went to PT, it was after a year and a half of fatigue, I was being treated for Long Covid. During my infection, I foolishly kept working out, I was used to working out 6 days a week, pretty strenuously, aerobics, and I was eating fairly healthy. This past December 2023, I got reinfected, and I had to quit working out, my body won’t let me now. I try to take short walks when it isn’t too hot outside. It is hurtful when they say you are deconditioned, when, clearly I was not.
A well meaning tip: If you are dealing with Long C, look up the “nicotine protocol” and Bryan Ardis, and the video “The antidote”, if you haven’t already. It got some heavy info, but might help.
47 year old woman here. I've been gaslit and treated as hysterical by medical professionals most of my adult life (I've been seriously ill since age 19). Look up the etemology for the word 'hysteria'. Disgusting.
I’ve had this condition for 4 yrs , drs of all specialties and 2 primary care doctors, have not helped me 1 bit. They look past me because they have more patients waiting to be seen. If theres no pill to give you, they wont help you ! Sorry to say: its a do it yourself job to educate yourself and learn all you can! After such a waist of my time and copays , very limited healthcare benefits that don’t cover brand name meds or tele-visits! Then bloodwork for full metabolic panel was 1, 000.00 out of pocket! Im worse then ever today. Can’t sleep at night, I believe my husband is disappointed in me being in pain and tired all the time! He might not believe me! Whenever I try to tell him what is happening, he wont look at me or respond with support or thoughts. He will quickly jump on to another subject that has nothing at all to do with me! I’m so lonely and lost and don’t think there any choices for me as no one takes me seriously! They must all think its an act! 😢
I feel your pain Kathy. It took years for me to finally get a diagnosis. My rheumatologist just listened to the hell I went through when and how I first got sick. She said right away that it was cfs. I’m sorry about your husband for also not understanding his wife. Did he know you before you got sick? My husband totally saw a big change in me right away. Show him these vids. There’s a documentry about cfs too. I tink it’s called Unrest. Make him watch that also. Hopefully it changes his attitude.
I feel your frustration and loneliness. My husband and I are separating, he became extra toxic after I started feeling unwell. It took me almost 5 years for a diagnosis, and a new primary care doctor. I also have no family support. It’s so hard.
I have had similar experiences. Once I collapsed on the kitchen floor, before I knew I had ME/CFS. My wife just scoffed, like I was being overly dramatic. That was a number of years ago, but the shaming for my condition has left a certain amount of anger and resentment even though I have made the effort to forgive her. 8-21-24; 10:15 PM.
@@towerjunkie19. Thank you do much for validating me and the support you gave.
Right now , a little bit goes a long way. I married my husband in 1984 , divorced in 2017, remarried 2019! During the divorce, I had a medical condition and emergency, spent 3 days in hospital! Then they started with the referrals to specialists all the while , no healthcare benefits, no job. 1,000. Per month in spousal support. I rented a small apartment lived alone with very little money and no friends or family. I just wanted it to end with all the anxiety and other meds that were no longer available to me. So, I’ve been . going through all the motions to get well, since I got my Health plan active again, supplements and physical therapy! Much more, and he used to act like he cared but the last 2-3 years of being remarried,my hubby, pretty much ignores me when I try to talk to him about my frustrations. Not nasty, just not interested in my condition although he still bugs me to take care of all his needs, including intimacy while I have chronic pain in Cervical spondylitis and hip pain, and peripheral neuropathy! Thanks again! I appreciate your support. I-feel for you , so sorry for your pain. You history sounds very frustrating. Pray and hope in god
🥀👌😢🥀
Eating healthier might not cure you but it’ll help your health tremendously.
Shouldn’t exercise when you’re having a bad day feeling weak and exhausted.
If you’re feeling up to it, go for a walk and maybe some light exercise. Movement is good.
I had a couple doctors tell me there was nothing wrong with me because nothing showed up on my blood test.
Im a man and this has happened to me
me too!
@fight4me747 frfr I started to show my A##but I just kept counting backwards in my head ,to no flip out !
💥💕💥💥💥💥Do you think Johnny about, let me take the title of a book it's called The body keeps the score.
What it is basically about, it's too heavy of a reed for me, but it's about how people that have gone through a lot of childhood trauma, wounding, abuse as children for long periods of time that they get ME/CFS more than anybody because they get illnesses due to all that trauma and everything. I wonder sometimes but then on the other hand I say I have no idea I just know that I swam in a river I got a horrible virus and after that my life was never the same again ever. I'm so damn sick I feel like I'm dying all the time. Anyways I wonder how many people are willing in the comments to share Do you have any kind of mental challenges or mental illnesses I have COMPLEX PTSD and severe treatment resistant DEPRESSION. I'm curious how many people with this terrible illness we have also have mental illnesses as well. Johnny thank you for this I like these short disease that you're doing I really do because at first I didn't think I'd like it that I wanted it to be more meaty but just getting these reminders is so validating and such a help from a peer that is suffering from the same thing you are. So have a great weekend or as good of a weekend as you can. And thank you for doing what you're doing.
kavitadeva I got mine after a car wreck in 1990 causing a brain injury and multiple physical injuries. NO doktor believed me calling me lazy, which I wasn't! Most still don't believe it's a thing. I have read the book (audio because my eyes are too tired) by Bessel van der Kolk, and it made a lot of sense. OUR traumas aren't the same as some people's, but we have been traumatized, yours was a virus. Most doktors won't test for parasites, but you might want to try to find a Naturopath who will. Daily I take MSM 3000mg, Cell Food drops (by Lumina), Curcumin, Magnesium, Creatin and enzymes to help my body break down food so my mitochondria can survive. I wish you well and hope that someday we can all find an answer to this terrible, life altering, debilitating disease that causes us to feel like we are dying all the time. I think I had a happy life before and I miss who I was.
I have ME/CFS. I didn’t have any childhood trauma and no mental illnesses.
@@andeebee2530 Thank you for giving me the feedback. I'm really trying to do a kind of a deep dive on people that say trauma causes the body to have responses of getting ill in their life not that it's their fault at all it's just the stress and the breaking down of safety Anyways thank you I appreciate your feedback we got one response and that is you Thanks
@@chinookvalley just to clarify before I go on and tell you how amazing your reply is I want to say the following The trauma is not getting the virus that's not what I'm talking about at all. What I'm talking about is you know the author's name very intelligent of you, it's a very heavy book I'm talking about the body keeps the score in other words the body reflects all the childhood trauma neglect abuse criticism lack of love and attention etc and the way it deals with it is it gets ill because the system has been broken down. I just wanted to clarify that because you said your trauma was a virus. no My trauma was my mother and it was a horrific childhood. But like I said either way all I know is what did happen to me is like what happened to you we had a terrible event and after that, the body just shifted and we got
ME/CFS. The ME part is some type of inflammation in the brain is my understanding. And of course you're so right doctors don't know about it. Do you know I asked my doctor if he knew about it and he said well I've heard of it but no I don't. I asked him Dr would you be willing to watch a 7 minute video by a doctor that only deals with m e c f s and he's been researching for years and that's the only disease he treats at this time in his career he says to me yeah of course I'll watch it 3 months down the road I find out by grilling him that he never watched it at all. I felt so betrayed they don't even care really I mean really when it gets down to it I has not had a doctor who actually cares. I don't know about you but for me it's very debilitating and I heard you say you do feel like you're dying isn't that horrible isn't it sad and like you said you know we have to grieve that old person that old self because I was a dancer I'm an artist I traveled all over America in my motorhome I couldn't do any of that right now if I wanted to or someone had a gun to my head. By the way do you suffer from any kind of mental illness can you please let me know that I'm trying to do some research on my own take care of yourself and I never say have a good day but I can say have the best day possible for you. Thank you so much for your reply.
Dr. Gabor Mate speaks of this as well. Everyone is different of course, but I do believe that if you went through trauma at some point in your life, your nervous and/or immune system might be weakened and more sensitive to chronic illness. I count my own trauma as the first factor in my me/cfs journey, the virus that came later in life was the main trigger though.
Sometimes people with physical limitations like me/cfs can and should be finding ways to do more than they are doing or think they can do. The person with the condition must the one who finds the way to overcome the challenge the condition presents. As always Great video. You do nice work.
👍